Changes Abound

Since Kate’s diagnosis, she has declined very gradually, imperceptibly at each moment but clearer at the end of each year. The pace stepped up about a year ago and again in the past few weeks or months. I lose track. For a long time, she and I have rehearsed the names of people we will see when we go out. Recently, she seems more concerned about remembering them. I am not surprised. It is impossible for her. She doesn’t do well repeating them back in our “rehearsals” in the car. The desire to get them right, however, is still strong even though most of the situations don’t require the use of names at all.

Last night was opera night at Casa Bella, and I did something different as we met people we know on our way in and as others who came in after us. Typically, I have said, “Kate you remember Paula and Bill” or whomever. This time I simply said, “Kate, this is Paula and Bill.” To me it took the emphasis off of her failure to remember and gave her the sense that she was meeting them for the first time. From her perspective, she was. All of the people I introduced know about her Alzheimer’s and have been very kind to her. I am sure each one recognized that I was trying to be kind to her myself.

That wasn’t the only difference last night. She is also getting more insecure about doing the right things when we are out. Even though I have been ordering her meals for years, she has started taking an interest in looking at the menu. It’s hard for her to read, and she gets frustrated with all the selections. She then turns to me and asks what I recommend for her or says, “What am I going to have?” Of course, she can’t remember my answer. That requires asking multiple times. Last night was the first time I recall her doing this with other people present. When she asked, I said, “I think we should get the veal piccata. It’s always been our favorite.” She said, “Order for me.” She asked at least a couple of additional times before our server took the order.

Something else occurred, but no one else would have noticed. I was seated diagonally across the table from her during the music. I noticed her looking very carefully at the man directly across from her. She was puzzled. She looked to her left and to her right. In a moment, her eyes caught mine. She gave a very subtle sigh of relief. Then she smiled. I knew that she didn’t know where I was. She was uneasy. I have definitely become her security blanket.

Yesterday in an email to my friends Tom Robinson and Bruce Morton, I mentioned something about Kate’s frequently overlooking food on her plate. I often point out half a sandwich or a significant part of her entrée that she hasn’t eaten. This is an issue with her eyesight that seems to be a result of her Alzheimer’s. Her ophthalmologist hasn’t located anything in her eyes that should account for it. There is something else that plays a part. She never remembers what I order or what she is eating except when she sees it. She forgets between bites. Thus, she lacks a memory that might clue her into recognizing she hasn’t eaten her entrée. This happened just this past Saturday. She had eaten half of her sweet potato fries before I reminded her of her salmon. She hadn’t remembered it, and she didn’t notice even though it was right in front of her.

It is impossible for us to fully understand what it is like for someone with dementia. We can only try.

Our Fifty-Sixth Anniversary

We had a nice day yesterday. It was our 56th anniversary. Quite a few times, we have been out of town celebrating the occasion. Tomorrow we are making an overnight trip to Asheville, but we’ll be back the following day. The trip is really more for me than for Kate. She can’t remember that it was our anniversary or that we have often celebrated there, but I remember. This is likely our last trip. I would like to see a couple of people who have been especially kind to us on past visits. One is a woman who works behind the desk at the hotel. The other is a server who has taken care of us at three different restaurants and is now working at a fourth. They are like so many others we see on our daily visits to restaurants around here in Knoxville. I want them to know how important they are to people like Kate and me. They all play a vital role in our own “unrecognized” support system.

I did something different with our sitter yesterday. I asked her to meet us for lunch, and she could take Kate back home. After we sat down, Kate played the role of a hostess and said to her, “Tell me your name.” She said, “Mary.” Kate said, “That’s a nice name.” I should mention that Mary is the only sitter who has been with us since I engaged sitters a year and eight months ago. Then Kate proceeded to point to me and said, “I’m his daughter.” Neither of us corrected her.

When I returned home, I found the two of them in the family room where Kate was looking through her “Big Sister” album. I sat down with her, and we went through the rest of the book together. She continues to enjoy this album, but she never shows any improvement in her ability to recognize the people in every photo. She does generally recognize the photo of herself on the cover and often recognizes her brother who is seated beside her.

I had bought an anniversary card for her and written a short note printed with a 32-point font so that she might be able to read it. I read it for her but plan to put it in her memory book. We shared a tender moment as we reflected on our marriage and how fortunate we have been. Then we went to dinner and relaxed with music until bedtime.

She was in bed about thirty minutes before me. When I got in bed, I moved close to her and put my arm around her. I said, “We had another good day, didn’t we?” She agreed. I said, “We had a nice anniversary.” She said, “Anniversary for what?” I said, “It’s our wedding anniversary.” She laughed, something she has done quite a few times when she doesn’t remember that we are married. I said, “Don’t you believe we’re married?” She said she didn’t. I said, “Then how do you explain that we’re snuggled up in bed like this ?” She said, “Well, you’re very nice to talk with.” I said, “I love you.” She said, ‘I love you too.”

Life is different these days, but I hope you can tell that we still enjoy life and each other.

Bedtime Conversation

I am glad to report that the rest of our day yesterday went well. It was a good day. Once again, I want to underscore that did not mean any improvement in Kate’s memory or her confusion. In fact, the past few days she seems to be worse. I say it was good because she was happy and that we enjoyed ourselves.

Throughout the day she couldn’t remember my name and our relationship. Neither could she remember her own name. The difference from the morning was her not showing any signs of being frightened. When she wanted to know my name or hers, she asked as naturally as one might say, “Would you pass the butter, please?” The day ended in a conversation that was just that natural.

Kate got in bed about thirty minutes before me. The past few months I’ve been playing a variety of soft music while we go to sleep. Most of the time I play instrumental music. Last night I put on an old Nat King Cole album. When I got in bed, she said, “I like that. Who’s singing?” I told her. She asked, “What do you want me to do in the morning?” I said, “Well, we’re having lunch with a couple we know from Casa Bella’s music nights. We’re supposed to meet them at noon. I’ll probably get you up around 10:00 so that you will have time to shower and dress.” She said, “Who’s that singing?” I told her again. She said, “Tell me exactly what we’re going to do tomorrow.” This time I repeated what I had said before but added that we might drop by to see a friend who just returned home from the hospital and rehab and then come back to the house until time for dinner. She said, “Who’s singing?” I told her again. She said, “Tell me what we’re going to do tomorrow. Again, I repeated myself. She said, “Who’s that singing?” I said, “Nat King Cole. That’s one of our oldest albums (now streaming from Amazon rather than the original LP), and we’ve been together a long time.” She said, “How long?” I said, “Fifty-six years, and I still love you.” She said, “I love you too.” I said, “We have a lot to be grateful for.” She said, “Like what?” I said, “Well, we have two children that we’re very proud of.” She said, “We have children? Are we married?” I said, “Yes, we’re married and have two children.” She said, “What’s your name?” I told her. Then she asked her name.

We went through two or three more rounds of these questions and answers before Kate said, “I’m going to sleep now.” I told her I was going to do the same. It wasn’t long before we were both asleep. I know I was.

Lunch Conversation

During our lunch yesterday, Kate asked my name and then hers. She picked up the last name we have in common. Then I said, “Now, do you know how we are related?” (That’s something I don’t do very often. I never want to disturb her when she can’t answer, but she almost always engages in these conversations without any concern at all about not remembering.) This time she said, “Tell me.” When I did, she looked startled and said, “Excuse me?” I said, “That’s right. I’m your husband. You look puzzled.” I don’t recall exactly what she said. Here is what she was trying to say. “I was trying to think of the words I wanted to say but couldn’t. They are words I shouldn’t say.” She wasn’t clear, but I believe she was trying to say she was so surprised that she wanted to use profanity but couldn’t remember the words. I said, “Your surprised.” She said, “Don’t you think I should be surprised if we are married and I couldn’t remember?” I said, “Yes.” She said, “See, I’m smart.” I said, “I know you are. You are very perceptive and insightful.” She didn’t care for my translation and said, “I would say I’m smart.”

This was one of those times when she simultaneously shows that her memory is gone along with an intuitive sense about the situation. Her intuitive abilities permit her to see some things while her memory continues to fail.

Taking Stock of Where We Are

I’ve read that one of the first questions most people ask after hearing their diagnosis is “How long do I have?” That was true for Kate. I think the best answer is “It’s hard to be sure.” Kate’s doctor said, “I’ve had patients who lived for another twelve years, but it can vary a lot.” I’ve heard the same figure other places and also 8-10 years.

I was among those who wanted to know “how long?” However, having learned that we had less time than I expected before her diagnosis, I found it more helpful to focus on the present. Kate and I wanted to make the most of that time. On a continuing basis, I have felt knowledge of the various stages of Alzheimer’s is useful.

There are at least two widely accepted models that identify the symptoms that are characteristic of each stage. One has three stages. The other has seven. If I use the 3-Stage model, I believe Kate is in the latter part of Stage 2. The Alzheimer’s Association says that is the longest stage and can last many years. That seems to fit with Kate’s experience.

I have paid more attention to the 7-Stage model. Perhaps that is because it seems somewhat more precise. I know that’s a bit strange to say in that both models describe general characteristics. Not everyone exhibits exactly the same symptoms. I would say that Kate has been in Stage 6 for more than a year. Her recent changes suggest that she is nearing Stage 7. Here is how WebMD describes the symptoms for these stages.

Stage 6: Severe Decline

As Alzheimer’s progresses, your loved one might recognize faces but forget names. He might also mistake a person for someone else, for instance, thinking his wife is his mother. Delusions might a set in, such as thinking he needs to go to work even though he no longer has a job.

You might need to help him go to the bathroom.

It might be hard to talk, but you can still connect with him through the senses. Many people with Alzheimer’s love hearing music, being read to, or looking over old photos.

Stage 7: Very Severe Decline

Many basic abilities in a person with Alzheimer’s, such as eating, walking, and sitting up, fade during this period.

To get an idea of where Kate fits in these models, I think it is better to consider the kinds of behaviors that are now becoming commonplace. Here are a few things that have occurred in the past few days.

Confusion about Where She is

I don’t think she ever is quite sure of where she is with respect to the city of Knoxville. Increasingly, she doesn’t recognize that she is in her own house. She seems to ask where she is less frequently and assume that she is in Fort Worth. Leaving the restaurant the other night, she asked where her childhood home was located. I told her Fort Worth. She asked if I could drive by her house. I told her we would and planned to drive by one of our former houses in Knoxville. It turned out she forgot rather quickly. I just drove home. She never realized what happened. When we arrived home, we looked around the yard. Then I led her into the house. She asked if we were spending the night. I said yes. She wanted to know if I had everything we would need. I told her we did. She didn’t know it was our house. This is not a new experience. It is just more common now.

Having Milder, But More Frequent Moments of Anxiety

It’s been about ten months since Kate’s first attack of anxiety. It occurs when she seems to be aware that she doesn’t know where she is, who she is, or “what is going on.” Altogether she has had only five or six of them. Three occurred in the past week. One was yesterday morning.

She looked sad and/or slightly frightened when I woke her at 11:00. I asked if I could help her. She nodded. I asked her to tell me what was wrong. She didn’t say anything. She closed her eyes and looked so sad. I said, “I think I am your best friend. I would love for you to tell me what’s troubling you so that I can help.” She started to cry but didn’t. She didn’t say anything. I said, “I wonder if you might feel better if you got up and let me take you to lunch.” She nodded agreement. I proceeded to pull the covers back and help her out of bed. I walked her to the bathroom where she used the toilet and then brushed her teeth. Then we walked back to the bed where she sat down to get ready to dress. She said, “I am so glad you’re here.” I said, “You know that I will always be with you. We’re a team. We have been for almost 56 years. We always will be.” She said, “I know. We just clicked.” I said, “Yes, from our first date.” She again said, “I’m so glad I have you.” Then she said, “What is your name?” I told her, and she asked, “What is my name?”

When she had almost finished dressing, she said, “I’m feeling better now.” I said, “I think it was good for you to get up and dressed.” She said, “Yes, but I think it was also talking with you and knowing that you are always with me.” That was one of the many times that I was fighting back tears. We went on to have a nice day.

Recognizing Our Relationship

My guess is that she can’t remember my name or hers most of the time. About six months ago, I would have said she remembers that I am her husband about half the time. I would say that has dropped to 25% of the time. The good news is that she still responds to me as someone she “knows and trusts.”

Heightened Emotions

As she has lost almost all her rational abilities, her intuitive ones have become much more apparent. Her feelings for the beauty of nature, especially trees, are much more noticeable. I had someone refill the pots on our  patio and front porch with new flowering plants. She loves them. I did the same thing last year and hardly got a reaction.

She has stronger feelings about normal items in our environment and wants to take them with her when we go out. The other night she picked up one of the decorative pillows from our bed and took it to the car with us. When we got in the car, she asked what to do with it. I told her I would put it in the back seat. Last night, she wrapped her nightgown around her arm as though it were an injured arm. She was planning to take it to dinner with us.

There are numerous other examples of her emotional attachment and feelings about things. She has developed a ritual of looking at her ceramic cat and a photo of her father each time we are about to leave the house. On only a few occasions has she recognized him as her father.

She has been sensitive to sudden noises for a long time. Now she is frightened even by noises that are not loud. She is bothered by music in restaurants much more than in the past. It seems like almost anything can frighten her.

Music is even more important. She likes for us to sing together. Yesterday, we went to lunch at Applebee’s. It’s just a short drive from our house. I told her I was going to play some music she would like and turned on “Edelweiss.” It hadn’t finished when we arrived at the restaurant. As we walked to the entrance, I started singing it for her. She joined in. We didn’t get far before we stopped. The fellow serving as host opened the door for us. Once we had ordered, Kate wanted us to sing again. I hesitated for a moment. We were early, and there was no one seated around us. I started singing “Edelweiss.” She sang along, carefully following the words as I sang them. It was another touching moment.

She responds with sadness to the news or any other information that involves people who experience some kind of trauma. At Casa Bella this past Thursday, the woman sitting next to her told us about a fire that occurred in the restaurant years ago. Kate didn’t grasp that this was an old incident. She immediately took the woman’s hand with her own hands. She had such a sad look on her face. It looked like she was about to cry. I explained that this was something in the distant past. Then she was all right.

She also responds with a sad look and tears in her eyes when good things happen. Her response to her Mother’s Day cards is a good example. Another would be her response when I tell her I love her.

The heightened intuitive abilities have also been accompanied by changes in her aesthetic tastes. As we go through the laundry room to our garage, she often stops and looks at the items on the counter and admires the arrangement of things. Sometimes she moves some of them to other places she likes better. At restaurant, she sometimes uses her napkin as a place mat and carefully places her flatware on it.

Feeling More Dependence on Me

She asks me for directions on many things she would not have had to do before. For example, last night she asked me where to put her iPad after she had finished using it. Normally, she would just leave it wherever she was at the time. She has a greater sense of not knowing what is the right thing to do. She sometimes asks if she should take all the pills I put out for her. In restaurant, she sometimes asks me where to put her napkin. Over the past month or two, I have started cutting her meat for her. She likes that and has shown no effort to retain her independence.

At the same time I see her adapting well with the sitters, I also see signs of greater dependence. When we arrived home after lunch yesterday, the sitter was waiting for us. Kate said, “Who is that?” I said, “That’s Mary. This is my day to go to the Y. Mary is the one who will be staying with you while I am gone.” She looked disappointed and said, “How long will you be gone?” I said, “A couple of hours.” It’s nearly four hours that I am gone, but I know that she can’t tell how much time has passed. I think “a couple of hours” sounds better than “four.” When she heard that, she shrugged, and we got out of the car. Mary had gotten out of her car and greeted us. Kate responded like she was a longtime friend. Naturally, I felt good about that.

Once inside, Kate followed me to the bathroom where I was brushing my teeth. While she brushed her teeth, I went to the family room where Mary had taken a seat. Before I could say anything, Kate walked in and with a smile on her face said, “Richard said I could go with him.” I hated to tell her I was leaving, but that was the only thing to do. Fortunately, she accepted without protest though she looked disappointed.

There are two other things I should add. One is that she didn’t have as good a time at Casa Bella the other night. We were seated at a larger table with three other couples. That is just too much for her. At first, she seemed to try to be a part of the conversation. She ultimately sat back quietly. I hope that we will be at our regular table in the future.

The other thing is that she has seemed much more childlike in the past few weeks. That’s a little hard to describe, but it is evident in the way she expresses herself.

The rapidity with which the changes are occurring suggests to me that it won’t be much longer before she will be in the late stages regardless of whether I use the 3-Stage or the 7-Stage model. We have gotten along “remarkably well” during the earlier ones. I am hopeful that will be true as we go forward, but it is the stage everyone wishes would never come. I am no exception.

A Special Moment to Start the Day

Being Kate’s care partner brings with it the full range of emotional experiences from joy to sadness. As I have said so many times, we have been fortunate to share far more of those at the joyful end of the scale than the other end. Sometimes joy and sadness are intertwined. We had one of those moments a few minutes ago.

I was in the kitchen (my office) when I heard her say, “Hey.” I looked up at the display on my iPad. I didn’t see any sign of her. Then I heard a louder “Hey!” She wasn’t in the bedroom at all. She had gotten up without my seeing her on the video cam. I walked to the back and said, “Where are you?” She said, “I’m here. Where are you?” I walked down the hallway and heard her say, “Here” just before I saw her coming out of the guest room. I said, “I wondered where you were.” She said, “I didn’t know where you were.” I said, “I love you.” She said, “I love you too.” I gave her a hug and said, “Doesn’t it feel good to be with someone you love.” She agreed, and I said, “I hope I am your favorite husband.” She laughed and said, “Who are you?” I told her, and she said, “Who am I?” I said, “Kate Creighton, and you’re my wife.” She said, “I am?”

We started to walk back to the bedroom when I saw pictures of her maternal grandparents. I pointed them out and told her these were special people to her. She asked who they were, and I told her. She was quite interested and wanted to know more about them. I told her they were her mother’s parents. She asked her grandparents names one at a time, and I told her again. Across from those pictures is a photo of the home in which her father grew up. I told her this was an important place for her and explained the significance.

I walked her a little farther and showed her a picture of her father. I said, “This is a very special man in your life. Can you guess you that might be?” She couldn’t. I told her, and she said, “He looks like a good man.” I told her he was. Then showed her a photo of paternal grandfather and her uncle taken with managers of her grandfather’s lumber business. She didn’t recognize them or the photo but was keenly interested.

The next photo was of her mother when she was in her late teens, I believe. It is my favorite picture of her. I told her that she was also someone special in her life. She didn’t know who it was before I told her. It is a photo she likes as well. She said, “She’s pretty.” The last photo was of her father’s mother. Kate had no recollection of her at all. When I explained that she was her grandmother and that she was the first member of the family to attend TCU, she was excited.

It doesn’t seem that long ago that Kate could have walked along this hallway and told the same stories to accompany these pictures. It is sad that her memory is now virtually gone. She can’t remember them at all. At the same time, it was a moment of joy for me to tell her these stories and for her to hear them. It is moments like this that sustain both of as we move into the later stages of our journey.

More Insecurity and Memory Issues

Yesterday was a good day. I say that largely because Kate was in a cheerful mood. She was that way when she got up. As I have noted before, that doesn’t mean there was any improvement in her memory or confusion. When she appears to be so normal, I am still surprised when she says or does something that would be more characteristic of someone with dementia.

As she cheerfully got out of bed, she said matter of factly, “I don’t know my name.” We started to leave for lunch, and she asked my name and hers. She asked again as we walked from the car to the restaurant for lunch. She seemed perfectly alert and normal. There was no sign of frustration or anxiety. She just didn’t know our names and was matter of fact about acknowledging it.

At dinner, she said, “I want you to tell me what I would say that I want if you weren’t with me?” I told her there are two dishes that she likes and that she should ask for one of them. One is Tortelloni alla Stephania. The other is Tortelloni alla Panna. She tried to pronounce both names and did pretty well, but she wanted to get it right. She asked to see them on the menu. Then we practiced her saying both names several times. As we were doing this, our server walked to the table to take our order. She asked the server to help her say them. The server started to tell her the ingredients in each one. Kate was able to convey that she wanted to know how to pronounce the names. She practiced saying them several times. The server was new and didn’t know about Kate’s Alzheimer’s. I am sure she thought this was a bit strange. Ultimately, Kate was able to give the order herself.

My point is that Kate was unusually interested in knowing what she should do if I were not there to help her. I told her not to worry that I would always be with her, but she was obviously aware of how little she knows. It must have bothered her to think how she would order a meal if she were alone even though I could see no indication that she was disturbed. On the surface, her asking how to order her meal appeared to arise from an “intellectual” rather than an “emotional” basis. On a few occasions, she has also asked me how to get home after eating out. I have tried to tell her, but it is too complicated for her to understand or to remember.

The experience with the sitter yesterday also went well. The only sign that might suggest insecurity came as I left. She said, “You’re going to leave us?” I told her I would be back a little later. She was fine with that.

Last night she picked up a photo book of her father’s family. She spent at least an hour with it. She tried to go through it by herself. I gave her the chance to do that; however, she repeatedly had questions. I ended up standing by her chair as I watched the evening news. That way I could answer her questions as they came up and read sections of the text that she didn’t understand. She enjoyed looking at the pictures of her family. I look at her initiation of things like this as her way of trying to give herself a better sense of who she is. I am glad she has such a great collection of family photos. Working puzzles is entertaining, but the photos give her a better sense of herself and her place in her family.

Understanding What’s Going on in Kate’s Head

You might think that by now I would have a pretty good grasp of what Kate is thinking and feeling. I spend almost all of my time with her. I try to be a careful observer. I’ve read a good bit about others experiences and their insights, but what strikes me most is how little I really understand. I often relate my impressions and my guesses as to why she does what she does. I hope, however, that I never suggest that I have a firm understanding of everything. I don’t. Yesterday morning I had an experience that illustrates how wrong I can be.

Kate got up for the day about 8:15. She was happy and seemed very clear-headed. I didn’t see any sign of grogginess. She called me by name at least twice after getting up. I never asked, but I was confident that it was one of those times when she knew my name and hers and that I am her husband. Except for helping her dress, it seemed like a morning we could have had pre-Alzheimer’s.

On the way to Panera, we talked a little about our marriage. As we drove up to the restaurant, she said, “And what is my name?” I told her and she repeated it. She quickly forgot and asked me again. Then she said, “If someone should ask, how should I introduce him?” I said, “Who?” She said, “Him sitting across from me.” I said, “This is Richard Creighton.” It turns out that’s what she wanted, my name, but she was asking in what she thought was an indirect way. All the while she behaved as though her memory was perfectly normal. She fools me like this on a regular basis. No wonder she can be with other people without their sensing how far along she is or that she has Alzheimer’s at all. How many people with dementia do you suppose we confront during the course of our daily lives without suspecting a thing?

Ken’s Arrival

Like so many things, especially when it comes to airline travel, Kate’s brother, Ken, and his wife, Virginia, experienced a delay in their arrival yesterday. We were to have had dinner with them last night, but their flight didn’t get here until close to 9:00. I regretted not having that time with them but invited them to drop by our house on the way to their hotel.

They arrived at the house just after 9:30. Kate and I were in the family room when I heard them at them at the door. I got up to greet them. Kate stayed in her chair where she was working a puzzle. Ken and Virginia entered the family room ahead of me and said hello to Kate. They hugged, and she greeted them warmly. Everything seemed perfectly normal. It was a beautiful reconnection with her brother.

We talked about the day’s travel experience and laughed. They were both able to take it in stride. We caught up with their children and grandchildren. We talked a little about our courtship and a letter that her mother had sent to my mother talking about our “friendship.” There were times when Kate was confused and asked for clarification and spoke very little. Otherwise, she was enjoying the conversation along with the rest of us.

After an hour, Ken and Virginia left for their hotel. As soon as they walked out, and I had closed the door, Kate whispered to me, “Who are they, and what are they doing here?” I told her their names. She didn’t recognize them. Then I explained that Ken is her brother, and Virginia is his wife. I was floored that Kate had not realized this. She must have spent the entire time without knowing who they are.

This experience is a good illustration of a couple of things. First, it shows that even someone (me) who knows her condition best makes mistakes in judgment. I know that her memory is gone, but in many ways she still seems very normal to me. That often leads me to expect more of her than I should.

Looking back, I see that I didn’t handle the situation the way I should have. We had been sitting in the family room for over an hour without my reminding her that they were on the way and would be here soon. Of course, she forgot about our earlier conversations about their upcoming visit. I can’t remember exactly what I said when I heard them at the back door. It was probably something like, “They’re here.” That would mean nothing to Kate. In my haste to welcome them, I didn’t even walk ahead and tell Kate, “Your brother Ken and Virginia are here.”

The experience is also an example of how poor Kate’s memory (rational ability) is and how well she is able to handle a social situation through her intuitive abilities. Ken and Virginia are well-informed about Kate’s current decline. I am sure they noticed some changes since their last visit. On the whole, however, my guess is that they didn’t sense just how poor her memory is. I will be eager to get a chance to find out today.

Confusion Yesterday Morning

Kate woke up around 7:30 yesterday morning to go to the bathroom. She seemed rather alert. I didn’t ask, but she acted as though she knew exactly who I am. I realize, however, that appearances don’t necessarily jibe with reality. She went back to bed and slept until 10:30. This time she was confused.

I asked if she was ready to get up. She said, “I don’t know.” She didn’t look disturbed or frightened. It wasn’t the way she has been when she has had anxiety attacks. I asked if I could help her. She said, “I don’t know.” No matter what I said she said “I don’t know.” Then I suggested that she take a shower and that might help to wake her up. She didn’t want to shower.

I took another tack. I told her she should get dressed, and we could go to the family room where I might be able to show her something that would help. As she was dressing, she asked my name and her own several times. When she was finished, we went to the family room where I picked up the “Big Sister” album. We spent about about twenty minutes looking through it before going to lunch. She didn’t recognize the cover photo of herself with her brother. When we opened to the first page of pictures, she didn’t recognize herself, or her parents. As she has done in the past, she didn’t recognize her father after I identified her mother who was sitting with him. Although she didn’t show any improvement in recognizing her family, she did seem more comfortable than before. Her intuitive abilities were working.

As we drove to lunch, she seemed normal, and I was beginning to think she knew who I was. When we walked from the car to the restaurant, she asked my name. Similar moments like this over the past week suggest that she is close to losing the ability to remember my name and relationship to her. I am not expecting this to happen suddenly, but it is becoming more and more difficult for her to remember my name. I know it will only get worse. I still take satisfaction that she recognizes me as someone she trusts.

Yesterday on Twitter I exchanged several message related to the important of feeling safe among those living with Alzheimer’s. I am also encouraged that she continues to say that she feels safe with me. When this first started occurring, I didn’t know what to make of it. The more I have watched her decline and the more I have read, I have come to realize how frightening it must be not to where one is, who one is with, and “who I am?” I don’t think I would feel safe either.

When we got home, we had about twenty minutes before our sitter, Mary, arrived. Kate wanted to know what she could do. I showed her the three-ring binder with a lot of personal and family information. She was interested. When I left for the Y, she and Mary were seated side by side on the sofa going through the information. I was encouraged.

When I got home Kate was resting on the sofa while Mary sat in a chair across from her. Mary said that she and Kate had spent most of the time looking through the binder and then a couple of the photo books. She said Kate had been resting about an hour.

The rest of the day was uneventful. Kate indicated she was glad I was home and wanted to know “What next?” I told her it was time for dinner. When we returned home, she worked on her iPad until time for bed. She needed my help periodically but never showed any sense of frustration.

She got to bed a little earlier than usual but was still awake when I joined her an hour later. This morning she was up at 8:30 and took a shower. She didn’t show any signs of confusion or grogginess and acted normally toward me. I had her clothes out for her, but she went back to bed where she is resting/sleeping now. We don’t have any special obligations today. I will let her sleep until 11:00 if she doesn’t get up earlier.

The big event of the day actually comes tonight. Kate’s brother, Kevin and his wife, Virginia, are flying in for a short visit. Their flight doesn’t arrive until 7:00 this evening. They are renting a car and will meet us at the restaurant where I have made dinner reservations. Kate has changed a good bit since their visit in the fall, but I am optimistic that it will go well. I will be eager for the two of them to have some time together as they did on their previous visit. We have plenty of photo books to inspire good conversation. I am looking forward to having them with us.